Welcome to my journey with Neurofibromatosis type 2, known as NF2, a genetic mutation which causes numerous tumors to grow within my brain and spine. Since 2004, I have undergone radiosurgery and 3 brain surgeries for 7 brain tumors. Life with NF2 is definitely a test of faith and a challenge to keep positive. Join me on my harrowing adventure to keep active and live life to the fullest!

Thursday, June 18, 2009

Summer fun/work - I've been busy!

Here in the NW my summer started in May and I dug my heels deep down into it after a couple weeks of post marathon recovery. I have been keeping up with a weekly hike in the mountains (missed yesterday because we had an appointment to try on another drysuit down south. I am hoping to get in a hike tomorrow or Saturday at one of the local trails doable for me to hike solo.)

Since the start of June, Harley and I have been dedicating his Mondays off to go diving here in the NW. Of our 3 attempts, unfortunately we only got in one actual underwater dive as the visibility has been the worst I have ever seen (1-3 feet). We still suited up however and practiced donning our gear, entering and exiting the water, and snorkeling on the surface (which is quite a bit of work for me AND Harley who must suit up by himself as he helps me down to the water with my gear first).

I am still having a bit of a problem with my old drysuit which was made to specifications for when I was about 30 pounds heavier. As a result, my suit is HUGE and out of the water we actually need to press the air out of it. In the water, I am having continual bouyancy problems. We have been keeping an eye out for a good used suit for me but everyone either my feet do not fit and are too large, the suit is a hair too small or it is just too big. It has been frustrating to not dive in a properly fitting suit. Why don't I just got out and buy a brand new one? hehe Well it is VERY costly (over a couple grand investment for what I need). So the hunt continues!

With the nice weather comes LOTS of growth! I have been doing lots of weeding on our rural woodland property. I cannot keep up!

For nearly the past 5 years I have been unable to mow the lawn and do certain tasks in the yard. My balance is nowhere near back to normal but it is markedly improved since my utter downfall in 2005 where I lost it all. Further, the strength I have gained from weight training over the past 2 years has helped IMMENSELY allowing me to lug around heavy objects and push a wheelbarrel full of brush down the hill and back up as well as push the lawn mower in our very uneven yard. To date, I have mowed the lawn twice this summer and is the first I have done in 5 years! Trust me, our lawn is extremely challenging even for those with normal balance ability.

At the same time as all of these things, there have been repairs to problem solve, inside chores to be done, dogs to be walked (and nursed as Jake had another surgery to remove a LARGE tumor which became punctured), fitness to keep up (with hiking and diving once a week, I also do water aerobics once a week, running once or twice a week, strength training 3 days a week, and I recently started swimming laps in the pool with the new dive fins I got for christmas), researching medical options, and coordinating my medical records to be sent to the NIH.

I still have tons of cleaning to do inside this evening. I am going to skip out on the gym tonight and walk the dogs at the very least. I would really like to get in a short 30-45 minute run this evening if possible too which I think I need to do by myself because it is a little too warm for the dogs today. Katie has been having a very difficult time exercising in the heat.